Gripe away! We certainly understand!

Hugs,
ladybrannon

Willow:

i was wondering, since you don't have systemic lupus, would you be willing to post what the doctor told you were the differences of discoid lupus to systemic.

I have been thinking that we should try to do a sticky post about that...
Discoid
systemic
drug-induced
neonatal

what does everyone else think?

Thanks!
Ladybrannon

I think it would be a good idea to have some information about the different types of lupus. I have found several sites that describe the different types (lfa, webmd, etc.).

My understanding is that the "skin" lupus works the same way as sle, but attacks the skin. The discoid lesions, other skin sores, mouth sores, and hair loss seem to be the main symptoms. I have a lot of fatigue and weight loss and i'm not clear if that is related to the lupus. I had a terrible day on friday and my rash that had pretty much cleared up came back for a couple of days on my back (so i'm theorizing that stress might play a role).

The dermatologist is providing treatment. He says my ana is negative at this time, but it will need to be tested every six months. He did a biopsy of the discoid rash and it was positive for lupus. He has not done any other lab work and I haven't actually seen the lab results. I'm not sure if it would be wise to take a look at the labs with my family doctor and see if more labwork would be a good idea...Just to make sure.

Right now, I am taking prednisone and using betamethadine skin cream. He has given me mycelex troches for my mouth sores...It finally seems to be helping. He has said to wear sunscreen all the time, wear a hat when i'm outdoors, and no more sun...Ever.

That's pretty much been my experience and maybe some of the information you were looking for. I've found that pretty much every sore I have leaves a scar and it's been pretty frustrating to deal with. Like I said before, I know i'm not dealing with what someone with sle has, but I think being diagnosed with any type of lupus is fairly traumatic. I understand that about 10% of people diagnosed with skin lupus eventually develop sle. It has helped to be able to get my feelings out on this board rather than barraging my friends and family!

Good morning:

i am new to the site and fairly new to lupus, I was dx in june with scle...This is lupus of skin only. However unlike discoid lupus, this is usually a non scaring rash.

I have many of the other symptoms of sle, fevers, mouth/nose/vaginal sores, swolen glands (from epstein barr???), arthritic pain and lethargy...Oh yes, let's not forger the lethargy. They say this is fairly common with acle and scle....How fun!

I think it would be wonderful if you posted the different types of lupus...Sle, acle, scle, dle, tumid, natal and drug induced.

I am sorry to say you will probably not find much infomration on the skin types of lupus as I have been looking and information is minimal at best.

From what the dr's tell me the difference between dle and scle besides the type of lesions, would be the potential for a positive ana...Dle almost always tests negative for ana and only about 10% ever evolve into sle, scle can test postive on the ana and only about 20% ever evolve into sle and acle will usually test positive for ana and most patients evolve or already have sle.

Discoid lupus shoud be treated by topical and interlesion steroids....If you do not see an improvement, you should be asking your doctor about plaquenil (anti-malaria), this takes time to see the effect - anywhere between 2 and 6 months, however it does reduce the severity of the sores and can reduce sun-sensitivtiy.

For scle plaquanil will work similar to it does in sle and help with the joint pain too....

I hope this information is helpful to all.

Stephanie :d

Acute cutaneous lupus erythematosus (acle)
subacute cutaneous lupus erythematosus (scle)
chronic cutaneous lupus erythematosus (ccle) or discoid lupus erythematosus (dle) ...

Are all under the definition of skin (cutaneous) defined lupus...Therefore, when lupus is classified it is classified as such:

cutaneous lupus: acle, scle, ccle, or dle
systemic lupus: sle
drug- induced lupus
overlap: ra, myositis, sjogren's, scleroderma
neonatal lupus (rare)

fyi,
ladybrannon

I'm confussed! I have the sle type lupus, but most recently i've been getting skin rashes. Just yesterday I woke up to a rash about 2x4inches on my lower rib cage. It wasn't there when I went to bed the night before. It's red and sore!
Since I can't see my rh. Till nov. 11th , I am going to see my gp.And ask her about it. I'm trying to avoid the sun as much as possible, but this is un real!
And I agree with lady brannon, if you take predizone for any lenth of time, you will gain weight!!
I was taking a well known herble suppliment and was only a size 6 at 114 lbs. And after being on predizone I gained up to a now 181lbs and size16\18. I've refused to take predizone now for about 2yrs and my rh told me that because I took it for about 2 yrs straight 20mg. I would probably not be able to lose the weight.
My biggest fear is now that i'm having so....Mant new problems, they will insist on me going back on it for my well being.
This is tough! I don't want to gain more weight! I have tried all forms of exercise and am not able to keep up.

Sharon

*almost* every sle patient I know gets rashes. The rashes I get (to date about 7 identified and 1 unidentifies, and seen by over 10 doctors!) are dumbfounding!

They cover my entire body and disfigure it. I don't even look human when they get really bad. One time, my old rheumatologist got "sympathy" rashes and told me she had *never* seen anything like it.

I also know that *most* of my lupus friends have the rashes from the sun. Most also react poorly to heat.

Yes, sharon, the weight gain from steroids is *horrible* to get off. I was thinking...Maybe we should request a place (or even on this forum) where people who have been on long-term fairly high dose steroids can support each other to help lose weight. What do you guys think?

I have *finally* gotten off high dose steroids after two long, frustrating years. I will have to be in the hospital to *ever* take it willingly again. I should explain that by high dose that my average prednisone intake was about 60 mg. Going as low as a *daily, eg. Not tapering* 20 mg dose to a 500mg iv dose...*sigh*

i have, to date, gained around 93 pounds. (just typing that makes me nauseaous!)


hugs to everyone,
ladybrannon

I'm wondering if anyone else has had the same results I have had with exercise. I found an article on a study that was done with women where they exercised at their optimal heart rate for half an hour every second day for 2 months and completely put their flare ups into remission. I have only been doing this for a few weeks but I find it is reducing the redness of my skin rashes substantially.

Minelli